We spent about an hour playing in the garage earlier this week, with Teddy showing off all his skills riding different toys for his grandparents and bossing them around by making the take turns sitting on the lawn mower. It was fun to slow down and watch not only his physical skills as he rode a tricycle, a scooter and a ziggle but also his fine motor and motor planning skills.
For example, he zoomed around on the bike, backing up to avoid hitting the garage door, steering around obstacles and handling it like a pro. He has learned to actually scooter on the 3-wheeled scooter that provides a bit more balance. (He also believes he can do the 2-wheeled scooter just fine for the record. That is terrifying to watch.) When we encouraged him to show off the ziggle, he went across the garage first to get a helmet, stuck it on his head and proceeded to chew on the strap and then hopped on the ziggle. Part of the helmet was loose and in his face, so he attempted several times to adjust it because he recognized it wasn't right. I'm not quite sure why the ziggle requires a helmet, but I was glad to see at least something triggered the need to wear a helmet.
Then Teddy decided that he needed to do repairs on the various bikes. He got the socket wrench we use to put the bike carrier on the Tahoe, took it to his trike and began manipulating it around the wheel. Then he moved on the the ziggle, flipped it over and started "working" on it.
This type of physical play, fine motor coordination and pretend play is all fantastic to see. It was a nice opportunity to relax and enjoy the progress that Teddy has made.
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
Friday, July 3, 2020
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